Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: medications

Mar 24 2013

Better Medication Management

Lizze’s Mom came by yesterday so that we could refill Gavin’s medications.  I realize it’s a pain in the ass to do it this way but I’m very grateful they are willing to work with us. 

This let’s us remain responsible for his medications and allows us to control things a bit tighter.

Lizze’s parents have enough on their plate right now. By doing things this way, all they have to do is flip open the lid for his morning meds and do the same at night. 

We will refill every Saturday or Sunday……

Week one has been a resounding success. I hope that this trend continues.  :-)

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Permanent link to this article: http://lostandtired.com/2013/03/24/better-medication-management/

Dec 13 2012

Behind the pain

I wanted to take a minute and update you all on how Lizze is doing.  She has decided to put her pain rehabilitation on hold. She has very personal reasons for that but basically one of her aunts is very, very ill and Lizze is really struggling with that, as we all are.

At this point in time, she’s not in the right frame of mind to take on something as intense as pain rehab.

For the record, I support this decision because she only gets one shot at this. 

Right now, her place is at home and spending as much time with her aunt as God will allow.

Unfortunately, Lizze‘s is in a great deal of pain.  Her current doctors don‘t seem to want to manage her medications anymore. Even worse, Lizze ran out of her fibromyalgia medication a little while ago and so she is now behind her pain, instead of in front of it.

She’s not sleeping well and if she does by chance fall asleep, she has nightmares. 

I honestly don‘t know how long she can keep this up but she is determined to be their for her aunt as much as possible.  Unfortunately, she very, very limited right now. 

On the plus side, Lizze does have some good days where she’s able to actually walk around and participate in life.  My hope is that as she is coming off her medications, she will start to feel better.  The Cleveland Clinic said they believed the medications were responsible for much of her pain as well as her year long migraine

Please keep both Lizze and her family in your thoughts and prayers during this very difficult time

Permanent link to this article: http://lostandtired.com/2012/12/13/behind-the-pain/

Dec 03 2012

#Autism, #Anxiety and Tenex

In the morning, we have to take Elliott to see Dr. Reynolds and discuss his medications. This is going to be a serious discussion because we have some serious concerns about the anti-anxiety medication.

Elliott has become rather aggressive

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while on the Tenex.  He has been self-injuring and losing his temper quite a bit and this is very much out of character for him.

Instead of addressing the anxiety, it seems to be making things worse.

What’s the point of him taking it if it isn’t going to help?  The answer of course is, there is no point.

I’m thinking that it might be best to pull him off of anti-anxiety medications altogether because he keeps having adverse reactions.

Hopefully we will get some answers and options in the morning.

Permanent link to this article: http://lostandtired.com/2012/12/03/autism-anxiety-and-tenex/

Nov 28 2012

The Leap of Faith: We’ve arrived at the @ClevelandClinic for Lizze’s intake evaluation

Lizze and I arrived and the Cleveland Clinic asked few minutes ago. She’s filling out paperwork and I’m be supportive and trying to pass the time. 

Lizze and I are really long conversation on the way up here this morning.  We discussed many things, ranging from Elliott,  Gavin and Emmett to this whole thing with pain rehabilitation.

Lizze is really nervous about trusting this whole thing

For that reason,  I have decided to call this new journey we are about to embark on, The Leap of Faith. The reason for that is pretty straight forward.  Lizze is taking good a huge leap of faith by trusting the new doctors and in a process that she is unfamiliar with. 

Being off her medications scares her to death, and they plan on doing just that. 

This is by every stretch of the words, a leap of faith.

Permanent link to this article: http://lostandtired.com/2012/11/28/the-leap-of-faith-weve-arrived-at-the-clevelandclinic-for-lizzes-intake-evaluation/

Nov 27 2012

Lizze is being admitted to the Cleveland Clinic for 3 weeks

As you know, we spent yet another day at the Cleveland Clinic this afternoon. Lizze finally got in to see their award winning Headache Clinic.

Getting to this moment seems like it took forever and a day but we finally arrived.

We we’re in the appointment for maybe 15 minutes before the doctor stopped and said,”I think it’s best that we just skip to the chase.For the record, it’s not usually a good thing when you hear that from a doctor.

There are a ton of details but I’m going to cut to the chase as well.

Lizze is in bad shape. 

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Basically, the medications that her local neurologist had her on have completely screwed her body up and we’re talking bigtime screwed her body up.

She should never have been on at least 4 of her medications, especially not at the same time and they are very likely the cause of her year long migraine.

Essentially, what has happened is that Lizze‘s body now interprets everything as pain.  The specialists are saying that her pain receptors have basically been rewritten by the combination of medications and the amount of time she’s been on them.

This is something that, as you know, I’ve been worried about for some time

I didn’t think about the whole pain receptors part but I have been concerned that the medications we’re a big problem.

This isn’t Lizze‘s fault at all. She’s doing what her doctor had been telling her to do. She never once abused anything and essentially trusted her doctor. I’m actually really, really angry about that and believe me, this will be something that I will be seeking advice on. However, that’s for another day.

The best and only option Lizze has is to go through their extremely intensive, chronic pain rehabilitation program.

This program will require a 3 week admission and a huge financial, emotional, physical and logistical commitment. We will learn more details about this program and said commitments in the morning because we have to return once again for her intake evaluation.

What we do know for sure is the program runs from 8am – 5pm Monday thru Friday for three consecutive weeks. 

She will safely be detoxed off the medications she’s currently on, so she can avoid any withdrawal symptoms. She will also receive physical and psychological rehabilitation as well. 

They are going to help he learn to take control of her pain without needing to be so heavily, perhaps even dangerously medicated.

She will have an entire team of top tier doctors looking after every aspect of her health.  Their only goal is to get Lizze her life back. Needless to say, that would be a miraculous event and one that would be a long time coming.

That’s about all we know at this point and this is where reality sorta bitchslaps us right in the kisser.

We have already agreed to this, as what other choice is there?  She needs this and I will make this happen for her. The problem right now is that I have no friggin idea how we will pull this off. 

The most likely scenario will be to simply commute.  The word simply is probably very misleading.  We will have to drive over 3 hours per day, during rush hour traffic at the cost of at least $200/wk in fuel. That doesn’t include meals. We don’t know food works yet. I would suspect that she would eat there because they are going to be likely adjusting her diet.

There’s one other small problem. 

We have 3 special needs kids, 2 of which are in crisis at the moment. Gavin with his everything and Elliott with his anxiety and current hunger strike, due to his new tree nut allergy and fear of eating now.

Lizze and I are barely and I do mean barely holding it together as it is.  How can we possibly take this on as well?

At the same time, how can we not take this on?

We’re only talking 3 weeks but I am willing to say, with relative certainty, that this will be the longest 3 weeks of our lives. Lizze is totally worth the effort.

I’ve already talked my parents and Lizze has spoken with hers.  I told my mom that we will need any and all help possible in order to get through this. My sister commutes to work in Cleveland everyday and may be able to help with some of the transportation, as she drives burgers Cleveland Clinic on her way work. 

That’s about it. 

I can’t remember the last time I was this stressed out.  Lizze is totally freaked out and the boys are completely overstimulated and Emmett is just beginning a new flare up and his mouth is filling up with painful sores.

God, I think you have seriously overestimated my abilities on this one.  I mean, I know I’ve said that before but holy crap, I’m in so far over my head at this point.

Permanent link to this article: http://lostandtired.com/2012/11/27/lizze-is-being-admitted-to-the-cleveland-clinic-for-3-weeks/

Aug 02 2012

Medicating #Autism

I wanted to open up a dialogue about #Autism and medication. I receive many emails asking for advice about whether or not I think it’s okay to medicate their child for #Autism related behavioral issues etc.

I wanted to open this up to discussion. 

What is your personal experience with deciding whether or not to medicate your child, for whatever reason? What were your concerns? Was your doctor helpful? Have medications benefited your child or not?

I think this is an important topic because so many of us struggle with deciding whether or not to medicate our child. Hearing from other parents can really be a positive thing, regardless of opinions. Knowing that your are not the only one that has had to make this difficult decision can be comforting. Please share your questions, experience or even just your opinions.

Remember that I require that all my readers be treated with respect and dignity, regardless of differing opinions. :-)

I will share my experience with medicating any of my kids. For us it came down to quality of life concerns. If medications could improve their quality of life, that was a good reason to consider it. We always researched everything before a new medication was started. One of the things I would ask myself is why are we even thing about this?  Are we considering this to simply make our lives easier or is this the best thing for our son.

The decisions were never easy ones, especially with the hardcore medications we had to consider but with that said, it’s heartbreaking to watch your child struggle when there is something that could help. In so many ways, medications have helped our oldest Gavin, to regain part of his life that had been taken away by constant visual and auditory hallucinations brought on by a rare form of childhood schizophrenia.  Knowing he’s no longer afraid of things that only he could see and hear is indescribable. Truthfully, bringing him relief brought it for us as well.

Permanent link to this article: http://lostandtired.com/2012/08/02/medicating-autism/

Jun 03 2012

#Autism and Allergies

I know that my kids tend to be a bit more complicated than some.  However,  I was wondering if your child on the #Autism spectrum struggles with allergies?

Elliott and Emmett both have seasonal allergies and do not respond to typical allergy medications.

Their immunologist has them on plain old benadryl.  Elliott gets it at night,  until schools out and then he will join Emmett in taking it in the morning and at bedtime.

I was wondering if their lack of response to other allergy medications has anything to do with #Autism?  Do anything of your kids experience similar things?

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Permanent link to this article: http://lostandtired.com/2012/06/03/autism-and-allergies/

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